Both the Public and Qualified Medical Experts Are Failing to Recognise the Urgency Needed

MEDIA RELEASE:

Strictly embargoed until Tuesday 19 March, 2013, at 00:01

LACK OF AWARENESS RISKING THOUSANDS OF PEOPLE'S SIGHT EACH YEAR

• Nearly half of adults (48 per cent) have never heard of Age-related macular degeneration (AMD), the biggest cause of sight lossin the UK(1)
• Only just over a third of adults (36 per cent) would make an appointment with their GP or optician straight away if they started experiencing blurry vision or wavy lines(2)
• RNIB launches 'Spot the signs' to encourage over 50s to recognise the early signs of sight loss.

Lack of awareness of the symptoms and urgency needed to treat the biggest cause of sight loss in the UKis risking unnecessary blindness in thousands of people every year.

There are two main types of AMD, wet and dry. There is no current treatment for dry AMDbut sight saving treatment is available for the wettype if diagnosed in time.

About 40,000 people develop wet AMDeach year(3), however both the public and medical professionare failing to recognise the urgency needed to diagnose and treat the condition which can take your eye sight in as little as three months.

The recommended time it should take to be diagnosed is seven days, however the public not recognising the signs, and delays by some GPs, optometrists and other health professionals, are putting thousands of people's sight at risk every year.

John Morgan, 71, from Lancashire, had to visit four different hospitals before being diagnosed with wet AMD. However, unfortunately by the time he was given confirmation, it was too late and he lost the central vision in his right eye. John wasn't aware of AMD prior to being diagnosed.

He said: "There needs to be more public awareness about AMD, especially the wet form. We need to get the word out there. There's lots of publicity around cancer and heart disease but nothing about AMD. People just aren't aware of it and the urgency needed to get treatment for wet AMD.

"If I'd known back then what I know now, I would have been shouting from the roof tops demanding treatment right from the start. This can't continue to happen to other people."

New research commissioned by the Royal National Institute of Blind People (RNIB), as part of its wider Save our Sight (SOS) campaign, foundthat many patients were not aware of the symptoms of wet AMDor the need for urgent treatment (4).

RNIB's research report - Don't lose sight! Don't delay! - reveals:

• Nearly 60 per cent of patients were unaware of the condition despite having dry AMD - a more gradual loss of sight which cannot be treated but can develop into the wet form (5)
• Just under 70 per cent of patientswere not diagnosed within seven days - in accordance with professional guidance - increasing their chances of permanently losing their central vision(6)

Smoking is a risk factor, with smokers twiceas likely to develop AMD than non-smokers. Studies show that stopping smoking can reduce your risk of developing AMD (7).

RNIB is urging people to be aware of the early signs of wet AMD. Anyone who is experiencing changes to their vision such as straight lines appearing wavyor curved should visit their optometrist immediately.

Clara Eaglen, Eye Health Campaigns Manager at RNIB, said: "Losing your central vision can have profound consequences with many people unable to carry out basic tasks such as driving, chopping vegetables, reading a newspaper or writing a shopping list. However, it doesn't have to be this way and people should not be losing their sight unnecessarily when there's treatment available.

"We're encouraging people over 50 and the medical profession to find out how to spot the signs of wet AMD and understand why it's important to act quickly.About 40,000 people developwet AMD each year but the deterioration of your sight can be managed with treatment, if caught in time."

To find out more on how to Spot the signs of AMD and other eye diseases visit or call RNIB Helplineon 0303 123 9999.

-END-

Notes to Editors

For more information or interviews with case studies and RNIB spokespeople, including RNIB optometrists, contact Emma Mercer, RNIB Senior PR Officer, on 020 7391 2085 or

An embargoed copy of the report is available on request. Photographs illustrating how some UK landmarks would look to someone with AMD are also available, along with images depicting AMD.

References

(1+2)All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2151 adults. Fieldwork was undertaken between 27 February and 1 March 2013. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).

(3) The estimated prevalence and incidence of late stage

age related macular degeneration in the UK:

Christopher G Owen, Zakariya Jarrar, Richard Wormald, Derek G Cook,Astrid E Fletcher, Alicja R Rudnicka. Published in British Journal of Ophthalmology, on February 13, 2012.

(4) Spot the signs is part of the SOS campaign which aims to challenge unnecessary sight loss, encourage regular eye checks and promote the importance of timely access to vital treatment.

(5)Don't lose sight! Don't delay!Based on 62 patient interviews who were diagnosed with wet AMD post-Lucentis (NICE approved drug for use in wet AMD); Page 15

(6) Don't lose sight! Don't delay!Based on 62 patient interviews who were diagnosed with wet AMD post-Lucentis (NICE approved drug for use in wet AMD); Page 22The RoyalCollegeofOphthalmologistsguidelines statethatpatientsshouldbediagnosedwithinoneweek,andtreatedwithinafurther weekofdiagnosis - atotalof14 days.

(7)Evans, Fletcher and Wormald (2005): 28,000 cases of AMD causing visual loss in people aged 75 years and above in the United Kingdom may be attributable to smoking. British Journal of Ophthalmology, 2005, 89, 550–553.

About RNIB's research

RNIB commissioned The Campaign Company to conduct the research. It aims to better understand the different perspectives of patients, carers, clinicians, commissioners and other professionals who work in a clinical environment, and from this develop a rounded picture of wet AMD care.

In-depth telephone interviews were conducted as part of the qualitative research. This involved 163 people across the UK and included patients, carers, commissioners, clinicians and others who work in the clinical environment.

About RNIB

We are the Royal National Institute of Blind People (RNIB). We're here for everyone affected by sight loss - that's almost 2 million people in the UK. If you, or someone you know, has a sight problem RNIB can help. Call the RNIB Helpline on 0303 123 9999 or visit

About the Save our Sight Campaign (SOS)

Spot the signs is part of RNIB'sSave our Sight (SOS) campaign which aims to challenge unnecessary sight loss, encourage regular eye checks and promote the importance of timely access to vital treatment.

Over 50 per cent of sight loss is avoidable, yet you or someone you love could lose your sight. Those of us lucky enough to live beyond the age of 90 will face a 1 in 2 chance of losing our sight. With a population growing in age and obesity, RNIB’s SOS campaign is working to tackle the timebomb of avoidable sight loss in the UK.

About AMD

There are two main types of AMD, wet and dry. Both conditions impact on the macula, a tiny area of the retina at the back of the eye. It is responsible for our central vision, fine detail and much of the colour vision.

In dry AMD there is a gradual deterioration of the macula as cells die off and are not regenerated. With wet AMD the onset is much more rapid as abnormal blood cells begin growing in the wrong place and cause swelling and bleeding underneath the macula, causing much quicker deterioration in vision.

Patientsdescribedtheirinitialsymptomsof wet AMD inavarietyofways.Descriptionsincludedwavylines,zigzaglines,lettersinacrossworddancingabout,amauvearea,cloudyvision,aglare or black spot.

10-15 per cent of people who develop dry AMD also develop the wet form and someone who develops wet AMD in one eye has a 40 per cent chance of developing wet AMD in their other eye within five years i.

Age-related macular degeneration is the most common cause of blindness in the over 50s. There are more than 500,000 people with the condition in the UK. About 40,000 people developwet AMD each year.

Risk factors

The exact causes of macular degeneration are not known but genetics, diet and sensitivity to sunlight are all believed to have an impact on the likelihood to develop the condition. Smoking is a clear risk factor, with smokers twiceas likely to develop AMD than non-smokers.

Cost and impact

The impact of sight impairment and loss has been estimated to be more than £22 billion per year.

In2009AccessEconomicsprojected[i]thatasaresultofanageingpopulationby2050thenumberofpeoplewithAMDwouldriseto890,000(wetAMDwasnotprojectedspecificallybutbasedoncurrentratiosofwettodryAMDthiswouldtranslatetoover71,000newcasesayearby2050).

EstimatedspendingonAMDin2010was£1.6billion,whichduetotheexpectedincreaseinthenumberofAMDpatientsislikelytoincreasesignificantlybothinrealtermsandasapercentageofNHSspendingii.

[i]NHS Direct

ii FuturesightlossUK(1):TheeconomicimpactofpartialsightandblindnessintheUKadultpopulation